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Monday, 15 October 2018

BLAW - Tate.

On the final day of Baby Loss Awareness Week, we have Sarah and Tate's story. Sarah shares her experience with a rare condition called Vasa Praevia. 

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It was finally here! My last day of work before starting maternity leave! It was Friday 16thOctober 2015. I was 36 weeks pregnant and oh how I had longed for this day for the past month. I’d had pretty impressive Braxton Hicks for a while now and for the past week was convinced I was losing my mucous plug, in fact, only the day before I had expressed my concerns about this to my midwife who just brushed it off as end of pregnancy incontinence (Oh the joys!).

My Baby Shower 11th October 2015

I’d hopped on the bus to go into work and as I sat down I felt a bit of a pop inside and something warm and wet between my legs ‘this is it’ I thought excitedly, my waters have gone! And on the bus! What a funny story to tell at the baby’s 18thbirthday party! I got my phone out and text my mum as I felt more fluid pool, both she and my partner Andy planned to be there at the birth, I thought I would wait until I got to work to give Andy a call, it would be fine and plus, I didn’t want to announce to the bus full of people that I thought my waters had just broken! I felt the baby move, but it was a soft kind of half-hearted attempt at a movement which made me feel uneasy. This wasn’t what his usual movements felt like. He was strong and packed one hell of a kick and I’d googled many times if baby kicks can give you internal bruising. Something was wrong. 
By the time I hurried off the bus I could feel more of what I thought were my waters trickling down my legs, luckily the bus stop is directly opposite my work place and I rushed into the building and got myself into the lift. I finally looked down. Big, large drops of fresh red blood were dripping down onto the floor and my bright green dress had turned crimson from the waist down. 
My pregnancy had been pretty text book, apart from a large bleed at the beginning which I had mistaken for my period. I had just come off my pill the month before so I didn’t know my cycles properly and just assumed I’d come on my period. It wasn’t until about 10 days later did I suddenly think to take a pregnancy test. I was doing our weekly shop fighting waves of heartburn and nausea and I just didn’t quite feel ‘right’. It was the first time I’d ever peed on a stick and I genuinely could not believe it when a strong second line appeared! I had no idea how far along I could be due to the large bleed and the strong test line and lack of proper periods to go by. A quick call to my GP and I was up at MAU a few days later having a scan. Suddenly I was looking at this tiny little flickering blob on a computer screen. I was 6 weeks and 4 days pregnant and the little blob had a heartbeat already. We were told it was a threatened miscarriage and the sonographer explained that she could see where the baby had tried to implant higher up in my womb but had bumped all the way down to the bottom which is what had caused the bleed. Somehow the little blob had managed to hold on though and going forward I had a relatively un-complicated pregnancy. 
We found out he was a boy quite early on. My local hospital a teaching hospital and a friend of mine told me about a study they were doing to look at the growth of babies. It basically meant that I got lots of extra scans (3D ones at that!) and they said if they were to ever find anything that might raise any concern they would refer me for the extra additional care that I or the baby would need. At 16 weeks my little man quite proudly showed off all his bits to a room full of people including my parents! We wanted to keep his sex a surprise for everyone so denied all knowledge of seeing a penis and instead claimed it was umbilical cord to keep everyone guessing! It was at this point that I knew his name would be Tate. 
At our 20 weeks scan I was told, just in passing that I had a low lying placenta but it was fine and that most of them move up and I would have another scan to confirm that it had moved at 32 weeks. The 32 week scan came around and it confirmed that my placenta had indeed managed to move. It was 2.5cm away from my cervix and all was well. Apart from the sonographer mentioning that my placenta was a bit odd looking and had something ‘dangling down’ at the side. She wasn’t at all concerned about this though and didn’t write anything on my notes about it either. All was fine, I was OK’d for a vaginal birth and the rest was just a waiting game! 
Back in the lift I started to panic, I got to my floor and ran down the corridor. No one was in yet, it was still early. I finally found a light on in an office and barged through the door screaming for help. Someone was there and I asked her to call an ambulance. The bleeding was getting worse and I was suddenly worried about the mess I was leaving on the floor. I knew that the disabled toilet was a wet room so I settled myself in there, slumped in the corner and tried to call Andy. No reply. I called him 40 times in the space of a few minutes, still no reply. I sat there and watched as blood pooled around me, there was nothing I could do to stop it, it came out in waves and gushes and was all around me. 
The paramedics arrived soon after the 999 call. They asked me lots of different questions, how far apart were my contractions (I wasn’t having any!), how bad was the pain (I wasn’t in any pain!) and when was the last time I had felt the baby move. It had been nearly half an hour since that last movement on the bus. I was still bleeding heavily and the paramedics were in the process of moving me onto a trolley when I finally got through to Andy and told him my mum was on the way to pick him up and that he needed to go home and get my maternity notes. 
My boss came with me to hospital. She listened to me saying ‘no, no, I’m sure I’ll be ok’ nodded her head and jumped in the back of the ambulance holding my hand. I’d never been in an ambulance before, let alone an ambulance racing through the streets with the blue lights on and sirens whirling. The Midwifes took one look under the blanket covering my bottom half at MAU and sent my directly to delivery suite. Everything happened so quickly, the on-call Consultant came swooping in with a portable ultrasound machine and detected a heartbeat of 150bpm almost straight away. The relief! My baby was OK! My joy was short lived. The Consultant had grave concerns, he could see that not enough blood was being pumped though my baby’s heart. It was then that he diagnosed a ruptured Vasa Praevia. The bleeding was not coming from me, it was coming from my baby and he was dying. He then told me that he would be delivering my baby immediately and went to prep for surgery. Andy and my mum still hadn’t arrived, and it was my boss, who called them to say I was being taken into theatre and the baby was coming. She was then given a hair net and robes and bundled into the operating theatre with me, she held my hand again, told me I was being so brave and watched as my son was born. 
It was 9.29am when they lifted him up over the sheet and said ‘congratulations, you have a son’ I couldn’t believe he was here! How quick was that? 17 minutes after I was told I’d be having a C Section I was a mother! Tate Stuart Woodman Taylor, born at 36 weeks 6lb 4oz. Stuart – My Dad’s name, I always knew if I ever had a son I would name him after my Dad. And Woodman – a family name given to the first born son in each generation of Andy’s family. Straight away I thought the baby looked a bit pale, in fact not just pale. He was white. And he wasn’t crying. He was taken over to the other side of the room and I couldn’t see what was happening. What I now know is the anaesthetist purposefully stood in the way so I didn’t have to see so many people working on my tiny little baby desperately trying to resuscitate him. In the midst of all the commotion, Andy was thrown into the operating theatre. They hadn’t really planned this and the entrance to the room was down at the ‘business end’ so unfortunately he saw them pulling out my placenta before being told not to look and ushered over to my head. 
11 long minutes passed before we finally heard a tiny little cry. Andy was then invited over to meet his son. I got to see a glimpse of him and touch him before they whisked him off to NICU. 
Meeting Tate

During the following hours and days I was in an utter state of shock. What had actually just happened to us? To my son and would he be ok? That was a question that no one currently knew the answer to. Tate received 2 full blood transfusions in theatre after he was resuscitated and even more blood once he got to NICU he was currently being cooled to try and prevent any brain damage. This is when I learnt all about Vasa Praevia, a condition that I had never heard of but that had just changed my life.  
Vasa Praevia (or Vasa Previa) is a rare obstetric condition which affects about 1 in 2,500 pregnancies (or 1 in every 300 IVF pregnancies). It occurs when fetal blood vessel(s) from the placenta or umbilical cord cross the entrance to the birth canal, beneath the baby. Vasa praevia can result in rapid fetal haemorrhage which can occur from the vessels tearing when the cervix dilates or membranes rupture. If the condition is not diagnosed prenatally, the fetal mortality rate is estimated to be 95%. In cases diagnosed prenatally and correctly managed the infant survival rate is 100%. Diagnosis of Vasa Praevia is made by ultrasound using colour Doppler. Vasa Praevia can be detected during pregnancy with use of transvaginal sonography in combination with colour Doppler.  Infant death from Vasa Praevia is fully preventable if diagnosed prenatally. Vasa Praevia is not currently routinely screened for as part of the anomaly scan on the NHS. In fact the latest guidelines released by the Royal College of Obstetricians and Gynaecologists (RCOG) in September 2018 state the following “…based on an 80% detection rate, the 2014 UK NSC external review found that the targeted screening of all twins and singleton pregnancies with at least one high-risk factor could reduce the perinatal loss rate by as many as 150 cases per year.” It then goes on to say "Although targeted mid-pregnancy ultrasound screening of pregnancies at higher risk of Vasa Praevia may reduce perinatal loss, the balance of benefit versus harm remains undetermined and further research in this area is required." I’m not quite sure what ‘harm’ the RCOG refer to, but what is clear is that if this condition was routinely screened for hundreds of healthy babies’ lives could be saved each year. A recent poll of over 1,000 people by ‘Vasa Praevia raising awareness’ showed that 99% off the people that participated would want to know if Vasa Praevia was suspected at the mid-pregnancy anomaly scan. There are two different types of Vasa Praevia as illustrated in the below diagrams. I had Type 1 Vasa Praevia. 

The only risk factor I had for Vasa Praevia was my low lying placenta. I now know that the bit ‘dangling down’ at the side that the sonographer mentioned at my 32 week scan was in fact exposed fetal vessels.

Over the following days not only did we learn more about Vasa Praevia, we also learnt more about Neonatal Intensive Care or NICU. Tate was connected to an array of different machines and was monitored daily by 2 nurses at all times. He was by far the sickest baby in the unit and a Registrar would always loiter around his cot after the head Consultant had done his morning rounds. They didn’t know how long Tate had been without blood or oxygen and at this point, we just had to see what happened after the cooling process when they warmed him back up. They told us that he had a strong Heart and strong Lungs and we held onto those little nuggets of information like beacons of hope.   



Tate lived for 5 precious days in NICU. I always like to tell people that he lived for those 5 days, not that ‘he died after 5 days’ they were the hardest days of our lives but part of me looks back on them with so much joy, it sounds odd I know, but that was my first experience of motherhood and I want to be able to remember Tate for the light that he bought into our lives. He battled through those days, and so did we. Always trying to find a positive out of a sea of negatives. Sometimes it was hard to see past the breathing tubes, the electrodes coming out of his head monitoring his brain activity, the multiple wires coming out of his arms, the cannulas’ and the picc-lines. By the end he was on full life support, but occasionally he would take a breath for himself and it was for those moments that we were hanging on for and fighting for. On day 4 Tate got to travel to the other side of the hospital in what I liked to call a little space ship for an MRI scan. I was so pleased he got to do that little trip, surrounded by a crash team and ‘Mr Snuggles’ his comforter, he got to see the ‘outside’. 

Tate's "Spaceship"
The MRI revealed the news that we hoped we would never hear. Tate had no brain activity. The fetal haemorrhage had left his brain without oxygen for too long and there was nothing else that could be done for him. Suddenly, I felt like we were being cruel by keeping him alive, he had already gone and we were selfishly trying to hold on to his broken little body. The team of nurses in NICU were wonderful. They gave us the privacy we needed and the time that we wanted to spend with our little boy. They asked us if we wanted a Priest to christen him – we declined, we were never religious and no amount of praying was ever going to bring our son back to us. We are even less believers now, how could any ‘God’ let this happen?
We bought in our families to meet Tate and say goodbye to him. It was pretty obvious to the rest of the unit that we had just received the worst possible news, the nurses put up a privacy shield around Tate’s cot and bent the rules by letting us have as many visitors as we needed. Once Tate had met his family, they then helped us wash him, they let me change his nappy and helped us pick out the clothes we wanted him to wear. We chose what should have been his ‘going home’ outfit. We were given a ‘4Louis’ memory box, which enabled us to take his handprints and footprints (which we would both later get tattooed on our bodies). We cut a special lock of his beautiful blonde hair and made casts of both his hands and feet. 
We didn’t want to say goodbye to Tate in a room full of people we didn’t know and around lots of other distraught parents, so we arranged to Tate to be bought into a little side room, a room where we could be together as a family for all of a few minutes. 
Tate passed away peacefully in his Daddy’s arms at 6.04pm on the 21stOctober 2015. A tragic and unnecessary death, which could have been easily prevented with a simple colour Doppler ultrasound. His death crushed us and we still suffer from the consequences of it daily, ask anyone who has lost a baby and they will tell you that the grief never goes away, you just learn how to live with it each day. Once you lose a child your life is forever changed. Tate became a big brother to Chester in April 2017 but no matter how many living children we may be fortunate enough to have, Tate will forever be the missing piece of our family.


You can find more information on Vasa Praevia here: 
International Vasa Previa Foundation (http://vasaprevia.com/)
Vasa Praevia – Raising awareness (http://vasapraevia.co.uk/
A new Petition has been set up to challenge the RCOG to change their recommendations to NOT screen high risk pregnancies for Vasa Praevia please help us to save little lives by signing it and sharing if you can: https://www.change.org/p/royal-college-of-obsetricians-and-gynaecologists-save-150-babies-per-year-by-routine-screening-for-vasa-praevia

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Thank you so much Sarah for sharing beautiful Tate. It's so important to talk about rare conditions, I'm honoured to be able to share your story. 

Katie xx


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Saturday, 13 October 2018

BLAW 2018 - Tilly.

Today my friend, Charlotte, is sharing her special little girl, Tilly. Thank you so much Charlotte for telling Tilly's story, I feel honoured to be able to share it. 
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Thank you to Katie for giving me the opportunity to tell Tilly’s story on your beautiful blog. 


On the 29thDecember 2017 I saw those 2 pink lines on not one, not two, but three pregnancy tests. I couldn’t really believe it. Deep down I don’t think I ever thought that it would happen for me. It was such early days yet my brain could not help but begin to plan; to get excited about this new little life growing inside of me.
Fast forward to the 19thweek of my pregnancy through lots of morning sickness and other pregnancy related ailments. Ian and I went on a short break to Granada before the baby arrived; our last holiday with just us two. On the way to the airport we stopped in Manchester and ordered a pram and a car seat, it was perfect. I pretty much wished this holiday away because I knew that when we arrived home it was time for our 20 week scan and of course, time to find out the gender of our little one. I was so excited. I was so naive.
On the morning of the 20 week scan I baked a cake to take round to my in-law’s; I planned on filling it with either pink or blue smarties once we had found out the gender. The cake was never completed and still to this day I struggle to go down the baking aisle of the supermarket, almost like it’s a reminder of my naivety.
I lay on the bed in the scanning room, my heart thumping. Within seconds of having the cold gel on my tummy she asked if I had felt my waters break or felt any fluid leaking. I hadn't. She explained to me that there was barely any fluid around the baby. I felt sick. Feelings of absolute dread and anguish washed over me. She then said that she couldn't make out all of the organs due to the lack of fluid so I was asked to go and sit back in the waiting room and allow my bladder to fill up. I sat there wishing and praying that everything was okay. We were called back in and she soon found the kidneys and bladder that she had been looking for. They were all fine. I started to relax a little and even managed to give Ian a little smile. She continued to move the scanner around my tummy, reading out numbers to her colleague. She then fell silent for an uncomfortable period as she pushed the scan probe harder into my tummy to get a better view. She hadn't told us the gender. She put her probe down and I knew it was bad news. "There's something there but I don't know what it is, I've never seen it before and I can't tell if it’s attached to the placenta or the baby".  We didn't know what was wrong, we just knew it wasn't good. We were then directed into a different room, one with comfy seats and a coffee machine and it dawned on me that we were in the "bad news room". I barely remember walking back to the car that day. We were numb, our world had begun to shatter. I got home to my half finished cake and sobbed.
After two very long days of replying to text messages from well-wishing friends who had been excitedly asking us about the sex of our baby, we travelled up to Newcastle where we met Professor Robson, a fetal medicine expert. We sat for hours in the ‘counselling room’ and when our turn for a scan eventually came I genuinely believed that everything would be fine. I had so much hope. At this point I never imagined for one second that my baby was going to die.
We were seated back in the 'counselling room' and shortly afterwards, the Prof came in and joined us. He sat down and looked at us over his glasses and said the words that will stick in my mind forever, the words that made our hearts shatter; "this baby has a major abnormality". I was in complete shock. I went numb and felt like a fly on the wall watching the horror unfold. He carried on talking but it was like I couldn't hear him properly, like there was a white noise or a fog that wouldn't allow what he was saying to reach my brain. He told us that our baby had a sacrococcygeal teratoma; a fast growing tumour attached to the sacrum. He said that my baby was 1 in 40,000. The bad news continued to flood in; we were told that she had a very poor prognosis and that continuing with the pregnancy would put me at too much risk. We were told that she would probably develop hydrops fetalis (fluid around the organs which results in heart failure) and die in utero. He said there was a possibility of me developing Mirror Syndrome which is basically a mimic response where my body develops heart failure too. He went onto say that if I did get to a point of delivery which could have been anytime after 32 weeks then I would have to have a classic c-section which involves a horizontal and vertical incision of the uterus therefore putting future pregnancies at risk too. He added that continuing to a point of having a c-section was a major risk which could result in me and the baby haemorrhaging severely due to the size of the tumour. And even once she was over all of these hurdles, she would have to endure hours and hours of extensive surgery to remove the tumour and still might not pull through. I felt like our world had just stopped.
We were then given 2 options: to terminate the pregnancy or to have an MRI scan to confirm the diagnosis followed by a consultation with a paediatric surgeon. We chose the latter. 

We travelled home and began a week of what felt like mourning. We were grieving for a baby that was still alive. The more we talked about it the more it came apparent that Ian was not willing for my life to be put at risk and we felt we had no other option but to terminate. So we lived a week of thinking we were going to have to end the life of our precious, much wanted baby.

A week later on my 29th Birthday, now 22 weeks pregnant, we travelled back up to Newcastle truly believing we were in store for a day's counselling about having a termination.  We met a paediatric surgeon however who told us that if we managed to make it to 32 weeks and he was handed a "healthy" baby then actually she would have a good prognosis and would go on to lead a normal life. We were told he would operate on her 2 weeks after birth and that although the surgery would be extensive, she would probably fully recover. We finally had a glimmer of hope. This was the best news we could have hoped for on my birthday.
Of course the risks Professor Robson had already told us about were still there but hearing such positivity from the paediatric surgeon made all of those risks worth it. We then decided to continue with the pregnancy and I again let myself believe that I may actually have a baby to take home at the end of all of this.

I'm not sure how the Prof felt about our decision, whether he thought we were foolish maybe, but he supported us anyway. He reiterated to us that he didn't think she would survive the next few weeks and that basically the odds were stacked against us. He told me that with a normal pregnancy, baby's can be born at 24 weeks and have a decent chance of survival but my baby wasn't normal and this was therefore pushed back to 28 weeks. We had to get to 28 weeks to give this baby any chance of survival. I was then scheduled for weekly ultrasounds to check for hydrops, heart failure and to see how quickly the tumour was growing.
So every week we lived for the following Friday, in absolute limbo. Every week we sat in that waiting room with the other expectant mums waiting for our scan to see if our baby was still alive. And every week she was. With barely any amniotic fluid around her, her organs were still developing and she was still growing perfectly. She was fighting away in there despite everything she was up against. Our little warrior.

Friday the 18th May came and I was now exactly 24 weeks pregnant. I'd had my scan that morning at around 9:00 and again, everything was stable. I felt so proud of her, so proud to be the mummy of this strong little human. We text our families the good news and they replied with relieved messages. Every week that passed was another hurdle that we had all overcome. Within half an hour of arriving home from the scan I noticed that I was leaking pink fluid. I phoned the community midwives and was asked to attend the delivery suite. I began to think that it was all a bit of an overreaction, it was just a little bit of fluid, nothing major.

When we arrived, all I could think was why was I here? This was for where women gave birth to their babies. My baby couldn't come now. She was only 24 weeks. I'd had it drummed into my skull that my baby wasn't viable until at least 28 weeks and that there was zero percent chance of survival if she was born now. The dread and the anguish that had become so familiar began to wash over me again as I felt the reality of the situation hit. The Registrar came in and my worst fears were confirmed; at only 24 weeks, my waters had broken. I knew how bad this was. I cried tears like I've never cried before, tears of overwhelming sorrow. A couple of hours later, I was transferred up to Newcastle.

Throughout the night I was seen by numerous different midwives and doctors. It was reiterated to me that there was no chance of my baby surviving if I was to go into labour now and the likelihood was that this would happen within the next 48-72 hours.  In the middle of the night a neonatal Dr arrived to see me. His arrival was a bit of a surprise considering the last Dr's opinion was that my baby had no chance of survival. We talked about what the other Drs had said and then he said to me "but what if your baby does survive?" After being told by some very senior fetal medicine Drs that this wasn't a possibility, I looked at him confused. He said that the current plan wasn't even giving my baby a chance, so he asked me "what do you want us to do if your baby is born and she is alive?" I said "I want you to try and save her". 

72 hours passed and I hadn't gone into labour. She was hanging on in there. Everybody began to relax. They now said that the chances of going into labour were getting less and less. I was told stories about ladies that had managed to get to over 30 weeks, some even full term. The day after I was admitted I was told that I would be an inpatient for the forseeable, basically until my baby was born. It's a strange feeling; wishing to stay in hospital for as long as possible, but I knew that the longer I was there, the more chance my baby had of surviving. So I pretty much made myself at home. 

On the evening of the 25thMay, a discomfort in my abdomen that I had been aware of all day began to worsen and I could hardly bear to sit down. The pain was worsening by the second and my bump now began to feel like it was on fire. I had never felt pain like it.

The next thing I remember was a Dr telling me that they suspected sepsis, which I later found out stemmed from me developing chorioamnionitis (an infection of the womb). She also said that I was 1cm dilated. She told me that this was it now - my baby had to be born by classic c-section (an inverted T incision of the uterus). The next person to enter the room was the anaesthetist. She talked at me about epidurals and general anaesthetics but I couldn't take in what she was saying. I told her that I didn't want to be awake and she agreed that because of the infection, a general anaesthetic was the safest option.

At about 11pm I was transferred. I remember passing a new mum cradling her baby as I was wheeled onto the delivery suite. I knew that wasn't going to be me, I knew I wouldn’t come out of here cradling a crying baby.

I remember feeling awful for not ringing my Mum to tell her what was happening but I couldn't bear to wake her up at midnight. If she was asleep she was oblivious to all of this and that to be honest felt like the kindest thing to do. An influx of Drs and midwives ensued. More bloods were taken and another cannula was inserted into my hand. Intravenous antibiotics and fluids were pushed through my veins. The Dr that was to perform the c-section came in and went through the consent form with me. I recall her telling me that if it didn't go to plan and there was difficulty getting my baby and the tumour out, my womb could become damaged and a hysterectomy would be the only option. I was absolutely petrified. The neonatal consultant arrived and told me that his team were ready to go into theatre to try and save my baby. He told me that if she couldn't be saved then she would be for "comfort care" and that she would be placed in my arms. It was at this moment that I realised I may never get to see my little girl alive. Everyone else in that theatre would get to see her apart from me because I would be under a general anaesthetic. The next person to enter the room was a consultant anaesthetist, someone who I will be eternally grateful for seeing that night. I told him I wanted to be awake to meet my little girl and he said that although a general anaesthetic is what they usually do in cases of infection, in my case a spinal would be the right thing to do.

So off I went, into theatre. Ian told me later that day that there were 16 members of staff in theatre that night. 16 people with different specialities and different skills, all with one thing in mind; saving me and my precious little girl. With Ian holding my hand on one side and the anaesthetist reassuring me on the other, at 00:56 on the 26th May 2018, we welcomed our first born, Tilly, to the world.

She was whisked away to the neonatal team in the corner of the room immediately but after only a few minutes the Dr came over and told Ian and I that they weren't going to be able to save her. She was brought over to me wrapped in blankets and placed on my chest. She was moving her little head and I could feel her breath on my cheek. She was the most beautiful little life I had ever seen and I felt so proud to be her mum.  She lived for just 34 minutes before passing away peacefully. It may sound strange to say that I feel lucky but I do, I feel lucky for every single one of those minutes that Ian and I got to spend with her. 

When I read Tilly’s story back to myself, I can’t believe these are my words. I still struggle to comprehend that this has happened to me. Losing a baby irreversibly changes you and you feel as though your life has been split into 2; the before and after. You struggle to comprehend how you will ever get through each day, each week, each month but 20 weeks on I am still here and I am still going. I can’t say that it has got easier because for me, the heartache still feels just as raw. What I can say though is that I am learning to carry my grief in a way that doesn’t debilitate me. I can laugh without feeling guilty and I can allow myself to look forward to the future. I take great comfort in knowing that Tilly will never be forgotten and that her memory will live on through her dad and me.


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Thank you so much Charlotte for sharing yours and beautiful Tilly's story during Baby Loss Awareness week. 

Katie xx
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Wednesday, 10 October 2018

BLAW 2018 - Judah's Cloud.

Day 2 of BLAW 2018, comes from Jenny. Jenny shares the story of her little boy Judah and how she has created a beautiful legacy in Judah's name - Judah's Cloud. 

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In July 2017 we were expecting our second child. Our daughter was just two when we found out we were pregnant but she would turn 3 before her new baby brother arrived. The pregnancy went smoothly and quickly until 39 plus 4 when we discovered he’d turn himself into a breech position. Due to his gestation and size we opted for a c-section, however we couldn’t get an elective appointment until 5 days after my due date. At the time we questioned the date but with the promise we would be seen if I went into labour, we left happy and ready to prepare for his arrival. On the day of the c-section I woke abruptly at 3am. Something was wrong, I could sense his absence so strongly, something I never imagined mothers would be able to do. There’s no way to fully describe the disconnect you feel when your child dies in the womb, but he was gone and I knew it. I suddenly felt like a person in a film screaming on one side of the glass whilst the person on the other side is oblivious. After trying everything to wake him, we took ourselves to triage where FDIU (fetal death in utero) was confirmed shortly after 4am.


After receiving the news that our son had died, we went home and moved all the baby related items into one room and closed the door. We took the car seat out of the car, knowing he’d never be coming home with us. Our daughter was coming back to our house with family whilst I was induced and I couldn’t bear for her to face a cot or pram after what we were going to tell her. Whilst we had those brief moments alone between leaving the hospital and coming back for induction, we desperately searched the internet for advice on talking to young children about stillbirth. Everything we read told us to be very clear using words like “died”, “dead” and “gone”, and not to use phrases like “sleeping”, “born asleep” or “too poorly”. There are many blogs that talk about the heartache and the pain of the following weeks, months and years, but parenting an older sibling was something that very few people talked about at the time. We took the small nuggets of advice and came up with words we were emotionally, practically and spiritually in agreement with.

I sat down my tiny three year old, held her in my arms and in the the numbness of the pain found the words “your brother has died, he’s in heaven now and he won’t be come home with us”. In hindsight that was the easy bit. As she grows and discovers more of what she lost, I find myself carrying my own grief and somehow hers too. At the time she didn’t understand what a brother was, but as she grows new waves of grief hit as she realises all that she has lost.

On Saturday 5th August at 7.55am, Judah Christopher Walsh was born weighing the exact same weight as his sister of 8lb 11oz. The staff bathed and dressed him and we returned home to Aveah the same day. Already I was pulled between two worlds; parenting a baby who had died (and believe me you still parent a baby after death) and parenting a child that so practically and emotionally needed me. I would be lying to say being mum to a living child wasn’t influenced by being Mum to a dead child, and not just in the ways you would assume. I hold her closer, I thank God for every minute with her, I fear for her safety beyond any normal level but I also face new pain every day as she reminds me of the hole in our family. 

Thankfully our incredible midwifes encouraged us to return and we spent many visits over the next 10 days holding him and making the only memories we’d ever get. The care and support we received from our hospital was beyond what words can even begin to describe. I can never thank the staff enough for crying with us, laughing with us and being there every step along the way. There’s never a good way to lose a baby, but the support we received was the best possible and I’m not sure I’d be here able to speak about my experience if it wasn’t for that. The hospital bathed and dressed Judah, and provided everything we needed. There were aspects that we quickly came to realise we were incredibly blessed to have access to. Simple things we took for granted like clothing that fitted because Judah was a term baby and the perfect white 3D foot cast the hospital had prepared for us. 

Judah’s foot cast we received from the hospital and inspiration for starting Little Cloud Casting. 

Seeing what they’d done for us and knowing that everyone wouldn’t get the same opportunities, and in the heartbreak and need to make our pain worth something, we simultaneously established a business and a charity. The business was to create beautiful 3D casts for families, whether their baby lived or not - something I hadn’t found accessible in my area. We wanted to create a professional and beautiful service that was proud to work with babies who had died and allow parents to keep a vital memory. The charity started to create and provide clothing for babies; allowing parents of any size baby to dress them in a real sleepsuit and hat. The latter is still in process and we’ve recently launched clothing boxes into three hospitals in our area. Each box contains two of everything; so parents can keep something their baby has worn. We desperately sought out a sleepsuit Judah was cremated in, and we wanted to help remove that search for parents in the future. Going forward we want to meet the needs of bereaved families and clothing is just one aspect of that. 

Packing the boxes provided by Judah’s Cloud to maternity units. Each containing two identical outfits and a little quote card to keep.

If you’d told me 18 months ago I’d be in this position, doing this and going through what I’ve been through, I wouldn’t have believed you! But each day I’ve woken up, kept going and slowly days turned into weeks, that turned into months and now over a year later aspects of me feel like they’ll always be broken, and aspects have already “healed” (excuse the cliche term). I wasn’t brave like people tell me, I wasn’t courageous, I just stayed alive and woke up each morning. If you are reading this and the overwhelming sense of grief is there right now, know that it won’t always be. I’m not sure at what point I felt like I’m no longer holding my breath, but I did. At some point I started to enjoy life again, even though there’s still moments or days where the wave of grief is overwhelming. Each day I find new ways to remember my son without living in despair and knowing that moving forward isn’t moving on. 

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Thanks so much Jenny for sharing Judah and your wonderful charity with us. You can find out more about Judah's Cloud here.

Katie xxx 


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